Abstract:
The goal of the present study was to examine the barriers to access in health
services faced by individuals with intellectual disabilities (ID), as well as the nature of
communication between people with ID and those who are directly involved in
supporting their health and well being. The study included in-depth interviews with five
adults who have been identified as having ID and are supported by a community agency,
five community agency support staff and four physicians who are specialists in
supporting people who have ID. A qualitative content analysis approach facilitated the
comparative exploration of key themes that each participant group saw as positive or
negative influences on health care access and on effective health care communication.
Themes drawn from the findings emphasize the unique roles each of these groups plays
within the dialogical framework of the health care encounter. Of particular importance to
informants was the issue of people with ID being seen as full participants in their own
health care who, like all people, are unique individuals and not simply members of an
identified or marginalized group. Participants across groups emphasized the need for the
health care recipient to be known as an individual who is an expert in her/his own health
and well being and, therefore, entitled to full participation with the support of but not
control by others.
